Worrying about people with dementia

Image source: www.seashell.com.au via googleimages.com

Image source: http://www.seashell.com.au via googleimages.com

Worrying is normal for the person living alongside a person with dementia, and as a family care partner or support person for a few people who have died from dementia I understand too well how difficult it is not to worry. When you love someone, and they are sick or troubled, not only do you want to support and help them, you worry about them. All very normal.

What happens too often though, in the carer role of the person with dementia – paid service provider or a family/friend support person – is that the their worry can become the catalyst for taking away our life and our rights.

It is an important statement to make, and the catalyst for this blog. Too often in the caring role, paid and unpaid, we do things in the ‘persons best interests’, or to remove the danger of litigation if providing paid care. This is all too often at the risk of the human rights of people with dementia.

My husband and BUB said recently;

Worrying is part of the territory… But don’t take your worry away,              by taking their life away.  

                                                                                                                                             (Peter Watt, 2015)

Locking people up who have mental illness is against the law, and cannot happen with out all sorts of legal sanctions needing to be met. Yet, we have, for many years, been locking people with dementia away ‘for their own good’. Even people in residential low care, with no risk of ‘escaping’ or ‘wandering’, are locked in for their own safety. And prior to going into residential aged care, they are told ‘this is your new home’. But a new home, and no front door key, the fine print that is actually missing in the marketing material.

People with dementia want to take risks, in the same way everyone else does, and until the later stages of dementia, when it really could be too risky, it is important to balance the worrying against the rights and life of the  person we are worrying about.

 

14 thoughts on “Worrying about people with dementia

  1. Pingback: Women and dementia #DAM2015 Day 5 | Creating life with words: Inspiration, love and truth

  2. Reblogged this on memory issues and commented:
    Kate always says it as it is. Her Blog today sums up so many of the feelings I have about my role as a primary care giver. Although I have to say I like Kate’s term of ‘care partner’ better and will use it from now on.

  3. How on earth do you do it. I wake up every morning here in England and you have blogged something that helps me to see the wood from the trees. Such a helpful post to a care partner like myself. I look forward to hearing your comments on that short article I sent you.

  4. Too right Kate! I’ll make sure “my girls” get across a roundabout without getting skittled, but if you want to go skydiving why would I protest?😉Your life, your thrills, your bruises.😊

    Seriously, I take Pete’s point. I think the PD dished out to care partners/family/supporters has a lot to answer for. As you know, I joined a FB carers’ group a while back out of curiosity. I can say that the dominant emotions there are worry, fear, confusion, frustration and anger. Worry dominates.

    V experiences all these emotions too. As do I, at different times & for different reasons.

    Generally though, most of the PWD around us seem less consumed by worry than their care partners: that of itself is an issue that so easy slips into anguish, panic, guilt, even “martyrdom” from care partners.

    I am sick n’tired of hearing that PWD lack insight. That may appear to be so if we others can’t communicate effectively, which happens to so many who are diagnosed years after they could’ve been, ie some PWD have been gradually shut out (or have shut themselves out) from their previous life due to their/the family’s feelings of shame.

    I am still horrified that as recently as 5-6 years ago you were not told your diagnosis was a terminal illness! Like 40 years ago with cancer…”in the patient’s best interest”.

    I wonder how many people live for years hiding their worries, the symptoms they’ve noticed (generally way before anyone else BTW) and have never heard the word “dementia”? (V & I hadn’t).

    We have a delightful woman in a local group who has refused for the 5 years since her diagnosis to let her husband open their door to anyone else. She has conversations with herself in the mirror that terrify him and delight her. He spends 2 hours each mealtime helping her to eat (separate foods on separate plates that he rotates) as she can’t remember what she’s just eaten. Yet now she dares pronounce the word “dementia” (maybe because it’s not “Alzheimers”?) and told me very clearly, with a wink, why she likes scarves (she used to be a buyer for DJ’s). I can’t help but imagine the two of them, real lovebirds still after 40+ years, each so alone with their worries & shut off from the world for so many years.

    Another “worry” story: a delightful, spry woman in her early 80s did all her legal paperwork years ago, appointing one of her daughters as POA & guardian (she lives with her daughter). Now that she’s been diagnosed with dementia, her other children have challenged the previous paperwork at the Guardianship Tribunal and this woman, dealing with her recent diagnosis, has been through a year of hell-beyond “worry”-defending her own pre-Dx decisions while the rest of the family argued that she lacked capacity even pre-Dx! How’s that for obscene?😤
    She has finally won.😊😄

    None of this would happen with a brain tumour diagnosis.

    • Haha, I loved that first line… I love it when you help your ‘girls’ get across the roundabout without getting skittled”. Skittled is such a good word too!! Of course I agree, and also believe it all comes back to the Prescribed Disengagement dished out to the person diagnosed, and the people around them supporting them. It sets us ALL up to fail, and with NO hope. And of course, none of it would happen with other illnesses, we would be told if we had cancer, we would be supported with cancer as a terminal illness, and we would be offered HOPE. ❤ ❤ ❤

  5. Wow Kate. You tell it like it is and you are on target. I would let Gregory go on walks alone. People would ask, “Don’t you worry about him getting lost.” And I would reply, “Of course, I worry. I love him don’t I?”

    But my resolve was to let him go on his walks until one day he was brought home, lost, by the police. I also had “mapping” put on his cell phone (like parents can do for their teens) and always made sure before he left that it was in his pocket and turned on.

    On the other hand, he and I decided together that he would stop driving because that would endanger no only him but others. And besides we love being together so much and I never minded being the “designated driver” like he used to do for me when we went to parties and I got to drink:-) He never took “giving up driving” as a loss of his masculinity as so many men do.

    In the long run, Gregory’s decline, when well into the tenth year after his diagnosis, was so dramatic during the last year, then the last month, then the last week … that many of the things I worried about never happened. That convinced me that worrying is not worth the energy. TRYING to not worry expends unnecessary energy as well.

    Do what you can in preparation for the future, research your alternatives, act intelligently and wisely … but do not worry. Serves no purpose.

    Instead of “worrying” Gregory and I decided to put our faith in knowing that we would know what to do when the time came. And we did, and even though we would not have ordered it this way, things are turning out well.

    • Thanks Michael, as always sharing your pathway with Gregory, is helpful for me, and I am sure others. I often say, “Guilt is wasted emotion”, and I believe that too, although not always so easy to live by! So glad you feel it has turned out so well, even thought the sadness is of course often still there xx

  6. Hi Kate look forward to reading your posts each morning at work before heading out to visit people living with dementia, and miss you when you arent their to help me! (no pressure!!!) but your words encourage me and keep me centred when having to support the PWD and their families and other networks. One question I would like some advice on, is how to support the PWD when they are over whelmed with guilt for what the symptoms of the disease is doing to the family and their lives??

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